Gilenya - first time taking pill, how did you find it?

So I'm here asking a question on behaf of my husband as I am concerned. He has had MS since 2008 he has done tysabri(1 dose) copaxone(on & off) avonex(a few months) it has been a up & down battle with him. He genrerally feels fine has symptoms & so far I have been treating him with natural medicine & vitamins diet etc. He hasn't relapsed in a long time I have been doing my best & now his neuro is giving him gilenya & I'm concerned on how did it feel the first time & by what dosage you felt improvement or what are things that you noticed change day to day. He has big memory farts where Its gotten concerning for me & he has muscle spasms in his left leg & his speech is geting a little more slurred. These new symptoms started after the only dose of tysabri other than that he is fine plays with our daughter is up early & continues on with life.

Responses (2)

I can't answer your question but I wanted to offer my blessings for you as his caretaker. Its a tough job you have, very much full of emotional ups and downs. Can I ask why he stopped taking the other meds he was on?

Thank you very much. Yes its not easy & injecting him was the hardest. It can be very emotional lately as much TLC I have given him these past 5 years he knows why I do it its all love:) well when we met he was depressed & on copaxone his mom begged me to talk to him about it & eventually I understood why he didn't like it recently being Diagnosed I understood. It wasn't working for him it made him have bad spasms & made him relapse more. Then avonex came in & we thought ok its now not a daily thing so progress:) same he relapsed bad & no more. So then came tysabri 2 years later got tested MRI checked for PML etc. Got 1 dose & that was that. Medi-medi was covering but nearest infusion site is literally 4 hours away. All the near ones wanted cash! Nobody would take it. He hasn't had stable therapy & is still the same man I met years ago.

Some perfections but all is good I am scared the insurance is going to give a run around & I really can't handle a relapse right now he has been dormant for a good time & I know the next relapse won't be forgiving. I won't just be heart broken our daughter will.

These expensive drugs will usually work with the insurance company and help pay for it. I know avonex has a group that you call with problems and they help work it out, I don't know about the other ones. But I do know that most manufacturers will help.

I find it hard to believe that any one would expect cash payment for these expensive drugs, geesh. I hope this works for him, since everyone with ms is different its hard to know what will help until you try it.

Oh if you only knew the headaches they have been. He had 6 already ready to go infusions of tysabri. Nobody near our house wanted to take him in. Then after 2 months the worker with tysabri just gave up. I know they work with you but trust me its not all rainbows & sunshine with the pharmaceutical companies. They don't always pay for everything & neither does Medicare. Well what I have noticed is when he gets IV salumedrol he does better when he takes a ms med he gets worse.